A study published on bmj.com reports on the failure of an extensive public information campaign designed to let people know of the NHS Summary Care Record (SCR) – just 30% of people living in the areas piloting the program have heard about it.
SCR is an electronic summary of medical records that is accessible to NHS staff via the internet, and HealthSpace is a personal health organizer from which patients can access their own SCR via the internet. Of several areas in England that have been piloting the SCR and HealthSpace, researchers studied three to assess how the programs would be received when they are rolled out nationwide by the English government. There has been much controversy over the program among people weighing the benefits of better clinical care and fewer medical errors against the potential drawbacks of higher costs and reduced patient confidentiality. Patients can actively opt out of the program if they so choose.
To gather information on the views of patients and the general public towards the SCR, University College London researchers focused on three areas where the program was being piloted. The researchers conducted 103 interviews with people who had recently used their area’s health service, and they held 7 focus groups consisting of people from voluntary sector organizations. They mainly talked to people with low health literacy, potentially stigmatizing conditions, or those who found it difficult to access healthcare.
Although almost the entire local population received letters informing them about the SCR, most study participants indicated unawareness of either the SCR or HealthSpace. Several believed, albeit incorrectly, that health professionals were already sharing electronic records. The researchers also found that about 66% of people had positive enough feelings about SCR not to opt out, but very few were completely in favor of the program. Most people used their own personal experiences and were actively weighing benefits versus costs in making the decision to have an SCR or not.
Participants liked the safety and consistency of having medical details in one place and the fact that they did not have to constantly fill out forms and remember the details or names of medications they were taking – a particularly important aspect for people with low health literacy. People were most concerned about privacy issues – either inappropriate use of medical records or breaches in security.
Two groups of people who tended to view SCR positively were those with complex health problems and those who previously had bad reactions to medications. Those with a history of mistaken identity or identity theft were the most opposed to the SCR.
Regarding the HealthSpace accounts, most people did not display interest and referred to it as ‘pointless’ and ‘irrelevant’. They largely did not have any interest in their own health records.
“Two key findings from this study – that many people fail to engage with the SCR until they have a relevant personal experience, and that trust is a feature of the interpersonal relationship rather than associated with particular healthcare roles – suggest that seeking a patient’s consent to view their record should occur as far as possible at the point of access in an unscheduled care setting. A ‘consent to view’ model, which is already in place for the emergency care summary in Scotland, might be both more pragmatic and more ethically justifiable than the current model of implied consent to upload, after which the record can be accessed by anyone who can claim a ‘legitimate relationship’ with the patient,” conclude the authors.
Patients’ attitudes to the summary care record and HealthSpace: qualitative study
Trisha Greenhalgh, GaryWWood, Tanja Bratan, Katja Stramer, Susan Hinder
BMJ (2008)
doi:10.1136/bmj.a114
Written by: Peter M Crosta